Tuesday, December 06, 2005

IAN’S TAKE

For months now I’ve been trying to understand why there should be such a gulf between the neurodiversity community and the biomedical communities. Of course, to call either group a “community” is a bit of a misnomer. There’s enough diversity of thought (euphemism alert: “diversity of thought = rancorous disagreements) that both sides claim ownership of the adage about herding cats. But certainly the conflict between the two groups seems insurmountable at times.

I have opined before that the differences in thought between the NDers and the biomeds is really just a matter of semantics, and it really comes down to a single word: “cure.”

I have tried in the past to explain that I don’t think trying to help a child move past the more problematic aspects of autism is irreconcilable with supporting the dignity of autistics. Sometimes, however, it’s hard to be heard when the more extreme members of either community are shouting out absolutes.

One of the voices that sometimes cuts through the noise is that of Ian Parker. I really don’t know much about Ian, except that he occasionally visits this site and leaves great comments. In response to a recent post, and the comments it brought, Ian wrote the following. I thought what he said was important enough to bring it out of the comments section and put it front and center. After quoting a few of the folks who left comments, Ian wrote:

I don’t want to put words anyone’s mouth, but it sounds to me like the authors of some of the comments in this post do not see autism as a disease (in some cases the quote is illustrative, in others I’m also bringing in an interpretation of a pre-existing body of writing). The definition of disease I’m using is

The reason I bring this up is that I may be misinterpreting, but it seems to me that more than a few who subscribe to a ND POV often bundle together the ideas that a) autism is not a disease but another way of thinking, with b) if one believes in treatment for autism (as distinct from co-morbidities) then one is not being respectful, and c) that therefore one either wishes to deny autistics their rights or may influence autistics to feel that they are not deserving. If I’m interpreting their words correctly then I have to disagree.

On the first point, I would suggest that autism can be both a disease and another way of thinking. Some of what I’ve read suggests that a common thread among autistics is a tendency to have an impaired ability (which is NOT the same as no ability) to carry out Emotional Coordination and Experience Sharing. From Dr. Gutstein’s “Solving the Relationship Puzzle,” pg. 33: “While typical children carry out Emotional Coordination effortlessly… it is actually a highly complex process, requiring the integration of a number of different brain centers. Success requires rapid attention shifting, careful observation and evaluation of subtle emotional states, an awareness of personal space and internal reactions to a number of other elements. If at any point even one of the many components does not function, the entire process of Emotional Coordination breaks down.” Presumably this at least occasional “break down” is responsible for some of the social impairments that many with autism face.

If you interpret the condition described in the quote above as meeting the definition of a disease then autism could be classified as such, regardless of views of whether other symptoms (e.g., sensory integration difficulties, etc.) are part of the pathology or “merely” co-morbidities. I would argue that there’s nothing pejorative in the above statement, and that the described condition DOES NOT a priori diminish other cognitive or reasoning capabilities. Difficulty in integrating incoming information does not invalidate the thought processes of autistics, or render them more or less distinct, diverse, or valuable, regardless of whether the thought processes are influenced by genetics, environment, or both. The above does suggest a disease state though. And Kev, just as you mentioned in posts this week that you fear an autism = mercury link may force certain types of treatment on your daughter, I fear that “autism as merely an alternate state of being” lets people off the hook for treating an expensive disease on the grounds that it is not a disease at all.

For the record, my daughter is not part of an RDI program, although it is something that we (my wife and I -- our 29 month old daughter very much enjoys some of the activities but has yet to state an opinion) are interested in pursuing and are currently looking into.

Second, implying that calling autism a “disease” or suggesting treatment shows a lack of respect suggests that disease, treatment, and respect for the person cannot go together. I think it would surprise and anger a lot of people to hear that the three cannot co-exist. Are people with CF considered less worthy of respect? How about MS? Cancer? Angelman Syndrome? Down’s Syndrome? Depression? All of the above are recognized as diseases. Or is autism the only disease for which those afflicted are unworthy?

There is a legitimate concern that some people may see any physical, mental or neurologically based disease as rendering a person less “whole” or less “worthy.” But the issue is with the person who holds such thoughts, not with the person who has the disease. The answer is to educate and enlighten those who hold these opinions, not to deny that the disease exists and label it as an alternate way of being, giving people a way to ignore it.

Third, the linkage is made between belief that autism is a disease and the lack of rights of an autistic person, through either denial by others or lack of assertiveness due to self-worth issues. My daughter is entitled to all of the same rights as anyone else, including the right to treatment (coupled with the right to not be subjected to unnecessary or risky treatments), the right to security of person, the right to an education, and the right to assistance (equality of opportunity) to enable her to become the best, happiest, and most self-actualized person she can be. As a parent I'll do my best to teach her to stand up for herself and exercise those rights. By recognizing her autism and challenging it, my goal is to give her opportunities and choices for her to make that she might not otherwise have. I don’t believe that this will change her personality or thought processes. But I do believe that it will add to her capabilities. Not doing all that I can -- if I believe that it will help her -- would be a denial of her rights.

I will oppose anyone who seeks to deny her rights because they see her as unworthy or less deserving, for whatever reason, including her autism. But I will also oppose those who feel that her right to treatment interferes with who “they” think “they” are or who my daughter should be. I respect others’ right to treat or not treat, depending on their view of risk and effectiveness. But it sounds like not all on the other “side” are willing to allow me the same latitude, implying that I am disrespectful or want to deny them their rights if I disagree with them.

13 Comments:

Ian's statement is all about "disability" (which has been taken up by the academy, for better or for worse: SDS. What is tricky is that, we are disability parents, not (some of us at any rate) not "disabled" ourselves. He captures a lot of the nuances I try to live with and remind people of, as I try both to teach Charlie to do things he certainly does not want to, and to just be himself, Charlie, who has autism, who is my world. I don't know what Charlie will say about my writing him when he's an adult but-- based on the child I live with and my resposbilities, duties, moral obligations as his parent--there are certain things I have to do to help him all that he can.

I think one of the problems in Ians post is firstly that he's trying to answer a number of different people who might have an overall position of agreement but who differ on the nuances.

Like Kristina I suspect, as soon as I read Ian's definition of 'disease' I thought that - for me - it missed the point.

Autism is classed as a lot of things - disease, disability and different state of being to name but three - according to whom you speak to.

So. Disease. As a word it has connotations that I simply don't want associated with my kids. If we look beyond the dictionary definition we all have associations with that word that are about illness, something catching, virulent and 'nasty'. I can accept the medical definition that Ian provides as factually correct but we all know that when we're dealing with people other than each other i.e. those whos lives remain untouched by autism then using words like 'disease' to help explain autism wouldn't do any good.

So basically, my issue with using the word 'disease' is not so much its medical definition but the very negative conotations the word carries outside of medical circles.

"And Kev, just as you mentioned in posts this week that you fear an autism = mercury link may force certain types of treatment on your daughter, I fear that “autism as merely an alternate state of being” lets people off the hook for treating an expensive disease on the grounds that it is not a disease at all."

A slight misinterpretation. I mentioned that a autism only equals mercury link was not a good thing. I also have been at great pains to reinforce my position that autism is not merely an alternate state of being. Like you, I believe that it is - regardless of cause but that there are lots of places and times where intervention is justified and appropriate.

However, we can't escape the fact that the word 'disease' whilst being correct medically, is not necessarily the right thing in social terms. To turn your argument on its head - autism is quite literally a different state of being. However, to use your words it is not merely a different state of being and neither is it a state of being without problems and issues that need addressing. Its also probably worth mentioning that the only person in this thread so far who has described autism as 'merely a different state of being' is yourself. I'm personally of the opinion that autism is not 'merely' anything.

"Second, implying that calling autism a “disease” or suggesting treatment shows a lack of respect suggests that disease, treatment, and respect for the person cannot go together. I think it would surprise and anger a lot of people to hear that the three cannot co-exist."

Thats a strange argument Ian and it stems from your personal opinion on the word 'disease'. I personally don't have much of an issue with medical people referring to autism as a disease - that really is a semantic issue. But as I've said, the word has conotations beyond the purely medical. I'd suggest that the best answer to your question is to ask those who are Down's etc if they feel valued.

"The answer is to educate and enlighten those who hold these opinions, not to deny that the disease exists and label it as an alternate way of being, giving people a way to ignore it."

You're beginning to lose me a bit here Ian. You seem to think that there's a whole bunch of people here who seem intent on denying that autism can ever be a problem. What we're trying to do is to get people to see that there are people underneath the labels, people who are as unique as you and I and who's uniquness in part stems from their neurology. If you're happy that that process is thought of primarily as a disease then thats up to you. I'm not.

I'm sad to see that you also want to paint autism as a 'black or white' issue. Autism can be a disease and a different way of being. One thing is a medical interpretation but my daughter is more than a diagnosis.

"As a parent I'll do my best to teach her to stand up for herself and exercise those rights. By recognizing her autism and challenging it, my goal is to give her opportunities and choices for her to make that she might not otherwise have. I don’t believe that this will change her personality or thought processes. But I do believe that it will add to her capabilities. Not doing all that I can -- if I believe that it will help her -- would be a denial of her rights."

And who exactly has said that you shouldn't? This whole argument is beginning to move into the area of strawman. The only difference between your quote above and something I might say is the word 'challenge' which I would replace with 'accept and help manage'.

"But I will also oppose those who feel that her right to treatment interferes with who “they” think “they” are or who my daughter should be."

Your daughter like mine is in a different state of being from you and I. It doesn't matter if you see that as a disease or as a disability or as something else - thats how it is. I personally think that those who are autistic have much more insight into our kids thought processes than we do - how could it be otherwise?

"I respect others’ right to treat or not treat, depending on their view of risk and effectiveness. But it sounds like not all on the other “side” are willing to allow me the same latitude, implying that I am disrespectful or want to deny them their rights if I disagree with them."

Of course 'not all' are willing. Do you happen to know of any large scale group of people who all hold exactly the same viewpoint?

I'm getting really very tired of people trying to twist autism into a 'black and white' affair. Personally, to me there's a huge gulf between what someone like Wade thinks and what someone like John Best Jr thinks - but their beliefs are very similar. Does this mean I should complain about Wade when John Best Jr calls me a child abuser?

I'm saddended and bewildered by a lot of your comments Ian. There seems to be a lot of room for common ground and yet you seem to want to turn your back on it in favour of seeing autism as a purely medical thing.

One day, I really hope that we can all see that autism is more than a 'disease', more than a 'disability' and yes, more than 'a different state of being' but a conglomoration of all these things depending on who you speak to.

Yes, Kev, this IS a post about disability, because that’s the whole reason for intervention. I understand what you are saying about the social implications of calling something a “disease,” but my observation is that most of the people who attach a negative connotation to the word are those who complain that there is a negative connotation. I tend to use the word “dysfunction,” or, more recently, “disorder,” but that is only partially a nod to some who find “disease” to be offensive. It has more to do with the descriptive specificity of the words I use. My use of those words does not change the fact that we are talking about what is, by definition, a disease.

Ian’s point about there not being a negative social connotation to disease is well-taken. The examples of negative social implications associated with diseases are relatively rare. With leprosy, it stemmed from an irrational paranoia about communicability. With AIDS, it stems from that same irrational fear coupled with a prejudice toward the groups who are particularly at-risk for HIV infection.

I will not deny that prejudice toward autistic people exists. It does. But that prejudice is not based on autism being a disease. Rather it stems from stupid misconceptions about the nature of the disease process.

I don’t see this as a post about disability, but as a post about the desire to treat autism being viewed by some ND proponents as disrespectful or a violation of their rights.

Just to get the point out of the way up front, I don't see autism as a black and white affair or purely a medical thing. The post starts with a discussion of disease because the differing views of whether autism has a disease component (as distinct from co-morbidities) is central to the point I’m suggesting. If the post were about some other aspect of autism the word disease most likely would not have been present.

I wrote that “I would suggest that autism can be both a disease and another way of thinking” and that “the described condition DOES NOT a priori diminish other cognitive or reasoning capabilities. Difficulty in integrating information does not invalidate the thought processes of autistics, or render them more or less distinct, diverse, or valuable, regardless of whether the thought processes are influenced by genetics, environment or both”.

Further, “By recognizing her autism and challenging it, my goal is to give [my daughter] opportunities and choices for her to make that she might not otherwise have. I don’t believe that this will change her personality or thought processes. But I do believe that it will add to her capabilities.”

I’m not sure what part of the above is black or white. Maybe I should have used the word ‘being’ instead of ‘thinking’ (I won’t go Cartesian and link the two – oops, too late).

Also, Kev, I didn’t misinterpret ‘autism = mercury’ but instead incorrectly worded it. Sorry. Your meaning in other posts was clear, my quote did not convey your meaning correctly, and your restatement was what I should have and meant to say.

“You seem to think that there’s a whole bunch of people who seem intent on denying that autism can ever be a problem”.

No, I said:

“I may be misinterpreting, but it seems to me that more than a few who subscribe to a ND POV often bundle together the ideas that a) autism is not a disease but another way of thinking, with b) if one believes in treatment for autism (as distinct from co-morbidities) then one is not being respectful, and c) that therefore one either wishes to deny autistics their rights or may influence autistics to feel that they are not deserving”

Nowhere did I say that anyone is intent on denying that autism can ever be a problem.

Moving on to the ‘D’ word. I fully agree that the word disease carries baggage for some, but again I think it is their issue. But it is also the word used by governments, the medical community, and many social services organizations when discussing treatment options and funding for treatment and amelioration. It is a correct term for discussion with these bodies in this context.

Disease is a word that Michelle Dawson has challenged at the Supreme Court of Canada. She sought and secured intervener’s status to challenge the notion that ABA/IBI were medically necessary treatments that autistic children were entitled to receive. In her factum to the court, Ms. Dawson’s attorneys wrote the following:

18. It must be underlined that autism is not a disease. Untreated autistics do not deteriorate and die. Mistreated autistics often deteriorate. This should not be assumed to be a feature of autism. Mistreated non-autistics, subject to prejudicial low expectations and poor care, also deteriorate.

20. Autistic people, like non-autistics, sometimes develop serious physical diseases, and sometimes suffer from mental illness. No evidence was sought from untreated autistics in these situations who could have explained to the court the distinction between a physical or mental illness for which “medically necessary” treatment must be sought, and autism, a difference which, being integral to the person must be respected...

It is not a difference in semantics when someone is seeking to demonstrate to the Supreme Court of my country (yes, I confess, I’m a Canadian) that the medically recognized disease that my daughter has is not a disease and that to require the government to fund treatment for it is a denial of the Intervener’s rights. Given the costs of ABA/IBI, to deny funding is to determine/deny treatment on the basis of income and/or wealth.

My daughter is in IBI. I pay for 100% of the cost (Ouch). At a communications course I take, she is the only child of the ten families involved who is in an IBI program. Others are ‘on the list’ (so is my daughter) for government funded IBI, but the list is long, funding is inadequate to cover demand, and many go without. The case in question was part of an attempt in another province (although the decision would have helped here too) to secure funding so that children with ASD could secure timely intervention and treatment. The decision went against the parents. Ms. Dawson did not the cause of the decision, but she did intervene against the parents. So Kev, when in reply to my comment that “Not doing all that I can … would be a denial of her rights”, you ask “who exactly has said that you shouldn’t?”, this might be a good place to start the list. And a perusal of some Canadian ND websites suggest the list has more than one name on it.

ABA/IBI is one of the few therapies rated as effective by ASAT (Association for Science in Autism Treatment). They define it as “the process of systematically applying interventions based upon the principles of learning theory to improve socially significant behaviours to a meaningful degree”. “’Socially significant behaviors’ include reading, academics, social skills, communication, and adaptive living skills. Adaptive living skills include gross and fine motor skills, eating and food preparation, toileting, dressing, personal self-care, domestic skills, time and punctuality, money and value, home and community orientation, and work skills”.

This is the intervention that apparently is “fundamentally inconsistent with the notion of respect for the individual” (Paragraph 39 from the factum).

How?

Among other skills, IBI has helped my daughter learn to walk (she wasn’t independently mobile at 24 months due to SI issues but is now walking and running up a storm), hold and drink from a cup, eat with a spoon, gesture, and make non-verbal requests. We’re still working on pointing, one finger tapping and pincer grasps. How does any of this a) make my daughter less autistic, or b) interfere with anyone else’s rights?

We’re not talking about chelation here. Or mercury, or MMR, or the DAN Protocol. This is an extensively validated methodology that helps autistic children learn the skills to cope with their environment and gain more independence and control over their lives. This is what was being opposed in the highest court in Canada because it somehow violates someone else’s right to “be” autistic, maybe by linking treatment to the “D” word?

I will continue to use the word “disorder;” as I said, I find that word a bit more descriptive anyway.

Thanks for the link. You are correct that the arguments are similar, but I have to say that I never found the oft-repeated comparison between autism and the former classification of homosexuality under the DSM to be very apt. Other than the obvious disinterest in further propagating the species, there really is no physical or social dysfunction related to homosexuality. Indeed, the position paper you linked to states that one reason for removing homosexuality from the list of disorders is that some “demonstrate no generalized impairment in social effectiveness or functioning.” The same might be true of a subset of high-functioning persons on the autism spectrum, I don’t think the percentage of autistics with “no generalized impairment” would be very high. I would be interested in seeing any studies on the subject, if anyone knows of any.

As Wade suggested in a comment on a prior post, I'd also enjoy to see Ian begin blogging.

The three 'd-words', disability, disease, and disorder, each have a different meaning in the english language. I can seem some aspects of each in autism. I also see that these words apply differently to various presentations of autism. A developmental regression has elements that align with the meaning of disease. A non-verbal presentation would fit with the meaning many people associate with disability. Behavioral and social problems seem to fit more with the term of disorder.

I recommend that we be flexible with the use of these terms. They mean different things to different people. As a parent of two children on the autism spectrum, I also recognize how different each presentation of autism is. This variation alone will dramatically influence the terms that we use to describe autism.

One solution is to avoid referring to it as a disease, disorder, or disability. Simply refer to it as autism.

Indeed, the position paper you linked to states that one reason for removing homosexuality from the list of disorders is that some “demonstrate no generalized impairment in social effectiveness or functioning.”

Now that the humor is out of the way, this line raises an interesting question, to which I'd love to hear the answer. Does anyone know the military's stance of accepting autistic recruits, as well as the rationale behind whatever position they may have?

I also wanted to mention that Shawn's comment has had me thinking for the last 14 hours or so. And it will have me thinking for some time to come. If you haven't already done so, check out Shawn's blog, which is as thoughtful and balanced as anything out there on the subject of autism.

As far as the ‘d’ words go, I’m not wedded to any of them, and totally agree with shawn’s comment. I also checked out Shawn’s blog. I loved “Mere Autism”, among other posts. Shawn, do you have an e-mail alert method for new posts? (Wade, you too?).

For what it’s worth, outside of cyberspace I use the word autism. Here I’ve used the word disease because a) parts of the autistic condition meet the description and b) that’s the term a lot of a lot of others in both camps seem to be using in both discussion of and opposition to treatment.

Changing the ‘d’ word to disorder (why not, if that makes others more comfortable?) does not change the point I’m trying to make. In the ND community there are many who do not believe autism – as distinct from co-morbidities, and some do not even go this far - should be treated. That is their personal decision, and I respect that. I also think there is a lot that we can agree on. I quite like this post by Jim Sinclair, for example. What I object to is when people cross over the line from sharing their beliefs to trying to impose them on my family, especially when that imposition involves denying treatment to others.

Kev wrote – “I personally think that those who are autistic have much more insight into our kids thought processes than we do – how could it be otherwise?”

Well, yes and no. The no is because some of the people who are in the ND community have opinions that are definitely infused with a strong sense of grievance, and this sense can turn into a missionary zeal and intolerance of others who do not share the same POV.

There have been many cases of abuse and ill treatment directed at autistics, as well as many cases of the rights of autistics being trampled or ignored. But it does not follow from this that those who are fueled by a sense of grievance speak for all autistics, that all autistics even share the same sense and strength of grievances, and that those who do share them agree on the same response. Further, not agreeing with or implementing someone's agenda is not the same thing as ignoring them, and those autistics (children and adults) who do not agree with them are not necessarily doing so because they are “gullible and easy to push around” (from a prior post).

If they are at peace with their autism and do not want treatment then good for them. Being at peace with oneself is not easy for any of us to achieve (I certainly haven’t managed it yet). But it is an heroic leap from there to the position that they know what is best for ALL autistics, including those who are willingly seeking out treatment, or that they automatically know our children better than we do, and know what is best for them or what they aspire to.

I am in the bio-med camp. I treat my child: not for just co-morbidities, but for what I consider to be the core deficits of autism itself. I do not proselytize, but do try to find a way if possible to politely enquire of other families I meet as to their beliefs and treatment plans, if any. The reason for this is that I feel that I can learn from everyone, and some of their practices and experiences may be beneficial to my child. I am also very interested in the opinions of the ND community for the same reason. If others ask in return, I indicate that I support a bio-medical approach, explain what the term means to me, and if they ask further I will share whatever info they reasonably want to know. If they don’t ask then I don’t press, and I’m certainly not going to berate anyone for not doing the same as I do, or try to block their access to whatever treatments or support they consider necessary because they are following a different approach.

I agree with the idea of autism as a disorder and If you allowed me, I will introduce also the word syndrome to the discussion. I do think that the complexity is so big that, depending on the individual presentation, it can be a disability, a disorder, a disease and a syndrome or combination of several disease several disabilities, several disorders. and this is not against the respect for the human being that an ASD child or adult is.Thank you for the discussion to all youMaría Luján

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